Challenges of raising deaf-blind children

The arrival of a new baby is the beginning of a joyous experience for many mothers, however, when the child is born with a rare disability, it marks the start of a torturous journey, writes NANJINIA WAMUSWA

It is every mother’s wish to give birth to a bouncing baby at the end of her pregnancy and subsequent good health, which leads to smooth parenting.

However, this is not always the case when a child is born with rare conditions such as dual-sensory impairment, commonly known as deaf-blindness.

This is a unique disability, which may only seem as inability to see or hear, but in reality deaf-blindness is a condition in which the combination of hearing and visual losses in children causes such severe communication and other developmental and educational needs that they cannot be accommodated in special education programmes solely for children with deafness or children with blindness.

“To comprehend this predicament, a person who is deaf- blind has a unique experience of the world. For people who can see and hear, the world extends outward as far as his or her eyes and ears can reach. For the young child who is deaf-blind, the world is initially much narrower. If the child is profoundly deaf and totally blind, his or her experience of the world extends only as far as the fingertips can reach,” says Dr Eugene Musungu.

For Caroline Mueni, despite her abounding love for her deaf-blind son, his arrival changed her life forever.

“My deaf-blind son has cost me two marriages and perhaps any other that could be on the way,” Caroline begins.

She gave birth to Antony Gichore in 1997 and a week after his birth he had not opened his eyes. She took him to MP Shah Hospital and was referred to Kikuyu Eye Hospital where a growth was discovered in both of his eyes.

Overdose

Three years later, Gichore contracted pneumonia and after receiving treatment at a private hospital, he became immobile. Caroline rushed him to Kenyatta National Hospital and was told the baby had been given an overdose of quinine, resulting in complete lose of speech and sight. He was declared deaf-blind.

More complications that required regular hospitalisation began, which had heavy financial implications on the family. This caused her husband to resolve to kill Anthony so as to end their tribulations.

“I resisted. He insisted that we kill Anthony and remain married or I let him live and he leaves us, but I declined. He left and that is the last we saw and heard from him,” remembers Caroline.?

Anthony joined Kabarnet School for deaf-blind children at the aged of six, but developed complication, which required close attention. He was transferred to Kilimani Primary School’s Deaf-blind Children’s Unit where he has been to date.

She depends on menial jobs for survival after losing formal employment due to her schedule of taking and picking Anthony from school. Over the weekend she is forced to lock him inside the house as she goes out in search of daily bread.

“For a child who cannot see and hear, it is hard to leave him under somebody’s care,” says Caroline.

In 2006, she got married again, but her second man abandoned her due to challenges of her deaf-blind son. Sadly, he left her with a second child, now five.

“It is through God’s mercy that I have come this far with all expenses including rent, fees and food on odd jobs,” she says.

For Jane Ouko, she gave birth to Louise Ouko 16 years ago. Louise weighed 1.9kg at birth, which doctors attribute to the fact that Jane suffered from measles during pregnancy.

Louise did not open her eyes until after ten days, but her eyes were swollen and oozed a white substance.

Painful reality

She took her to Guru Nanak Hospital where it was discovered that she had a hole in her heart. It shocked her to learn that the baby was not hearing.

“I banged doors, but she did not respond and the baby was declared deaf at Kenyatta. She was later on booked for eye operation at Kikuyu Hospital, but the procedure did not take place.

“I learnt the delay we faced was because doctors did not know the amount of anesthetic to administer during operation as she was still underweight,” remembers Jane.?

Louise developed pressure and retinal detachment in the eye and was declared deaf-blind. She later joined Kilimani Deaf-blind Primary School at five years. She is a curious child and would want to know who sits next to her in public vehicles.

“Because she cannot see, she uses her hands. At times she touches people who react very negatively and I’m forced to explain that she is deaf-blind, something many don’t understand,” says Jane. ?

Stigma

Neighbours have developed their own theories about her deaf-blind child. Some people say she sacrificed her own daughter through witchcraft to get riches. Her other four children are normal and her husband has been of great support.

Rebecca Murunga and Esther Kioko who have daughters suffering from the same condition face various agonising challenges with this condition.

In 2004, Rebecca’s husband of over ten years and a pastor deserted her because of the challenges of raising a deaf-blind child.

?“My husband has declined to support us and I’m left to support our four children single-handedly,” she says.

According to Dr Eugene Musungu, Rubella or German measles is known to cause deaf-blindness.

“Rubella is a viral infection and is different from English, or what is known as the normal measles. It primarily affects the skin and lymph nodes and is usually transmitted by droplets from the nose or throat through breathing or coughing,” says Dr Musungu.

German measles affect pregnant mothers in their first trimester (one-13 weeks) and transmitted to unborn child through the bloodstream, thereby affecting their hearts, ears, eyes and brain.

Complications

“The eyes form cataracts (clouding of lens), retinopathy (damage to retina) or microphthalmia (small eyes). The ears become sensorineural deaf. It also causes the development of a hole in the heart, between the pulmonary artery and aorta, therefore affecting its proper function. In most cases Patent Ductus Arteriosus (PDA), a congenital condition of the heart occurs,” says Dr Musungu.

Other effects are growth and mental retardation, malformations of liver, spleen and bone marrow problems.

German measles occur and disappear in three days, sometimes unnoticed. It is short, difficult to discover, and starts with small normal rashes on limbs and trunk and disappears without causing upset to the body system, Dr Musungu says. Sometimes one may have fever that is below 38-degree Celsius.

Doctor Musungu says: “It is very hard to diagnose because of its short duration. Before one comes to the hospital, it disappears only to be realised later when babies are born with these abnormalities. Data is also uncertain about German measles.”

In children, it can be prevented by giving a Rubella vaccine at 12-18 months and a third vaccine given at three years known as Measles-Mumps-Rubella (MMR) immunisation.

“Research into this condition has been difficult because there are currently few cases. However, there is need to raise public awareness on the issue,” he adds.?

At the same time, not all foetus of mothers who suffer from German measles are affected.

Dr Musungu also refutes assumptions that family planning methods cause deaf-blindness.

However, other infections during pregnancy can cause malformations that are congenital.

Rubella, like all viral diseases is difficult to develop a drug to treat it. However, it can be prevented by vaccination prior to pregnancy.

This vaccination should not be given to pregnant women. Women who receive the vaccination should wait for a period of two months to elapse before getting pregnant.